Olivia's journey has been rough - to say the least. Born perfectly healthy, her declining health has always been called a mystery. Fifteen years have come and gone, with no change to the daily seizures that have held our hearts hostage..... until now. Finding HOPE and healing for our girl began with the introduction of Medicinal Cannabis - A controversial treatment for untreatable seizure disorders.
Her story briefly -
At 18-months she developed little "shaking spells" in the middle of the night. Olivia's journey has been rough - to say the least. Born perfectly healthy, her declining health has always been called a mystery. Fifteen years have come and gone, with no change to the daily seizures that have held our hearts hostage..... until now. Finding HOPE and healing for our girl began with the introduction of Medicinal Cannabis - A controversial treatment for untreatable seizure disorders.The Neurologist called them "Generalized Myoclonic Seizures". In many cases this can be the beginning of a degenerative condition, but month after month Olivia “defied” this inaccurate diagnosis by continuing to develop normally. Several months later, after a medical procedure, the little "shakes" became large jerks that would catapult her to the floor. She stopped talking, stopped responding to our voice and appeared have entered her own little world. The seizures continued to change. They soon became "drop" seizures and would come on with no warning and she would fall or crash into whatever was in front or below her. They continued to worsen into classic tonic clonic seizures that would last anywhere between 40 to 90 seconds.
Complexity was the word often used to describe Olivia's condition. We've done our due diligence.....we tried all the medications, none worked. We tried the supplement route through a well-known clinic in Chicago. We then tried the Specific Carbohydrate Diet (SCD), to which the Gut and Psychology Syndrome (GAPS) diet is developed from. We saw such amazing results from this diet we decided to take her off the many supplements she was taking because we didn't think she needed them. Well, we were wrong, and she crashed. Apparently, the supplements were helping her --- it was not a coincidence. It made sense that to get her back (at least to the place before pulling the supplements away), we should just put her back on the supplements -- but it didn't happen that way. The complexity often used to describe her was now ten fold, any change we made "upset" her fragile hypersensitivity to change and her path became even more confusing and "crooked". The Medicinal Cannabis has finally given us a mechanism to control the extreme Neurological Inflammation racing through her little body -- something every anticonvulsant medication failed to deliver on.
Our beautiful girl
As a parent to a severely autistic child who has daily uncontrolled seizures, the memory of her being "normal" has never been forgotten. The hope of helping, if not stopping her daily suffering has been an uphill journey. Approaching her situation from a diet perspective is not an entirely new idea. Olivia was on a version of the SCD diet in 2005 with some success because I never introduced the homemade yogurt, which is the main healing modality. The main difference between then and now is the knowledge base of Dr. McBride and her ability to share the wealth of information she personally gathered as she cured her own severely autistic child with the SCD diet.
I do respect and am thankful for the excellent emergency practices of the conventional medical institution. Their services have literally saved Olivia's life on numerous occasions. Alternative care has taught me so much about the power of your own immune system, and the tragedy that can follow when the immune system is damaged. Why these two worlds can't work together to shape and protect us all is a shame.
This blog is really about our journey over the last 15 years. Although the focus is Olivia and her recovery, I will also include how this has affected our whole family and how we have dealt with this unexpected interruption in our lives.
Hebrews 11:1 -
Now faith is confidence in what we hope for and assurance about what we do not see.
Have a question or comment for me?
Saturday, April 28, 2012
Is it Genetics?
This has always been a question people ask me ---- does Olivia's condition run in our family? All I can say is that we have not seen this type of disability in either side of our families. And although we took her to the U of M and had every available genetic test run on her (which she passed with flying colors), the genetic counselor ended our consultation with the comment, "Well, it's obviously a genetic error, we just haven't identified it scientifically yet." Hmmmmm.....
They didn't have the answers.....again. Answers that made sense were not available.
I really liked how Dr. Natasha Campbell-McBride answers this, what she says does make sense, especially in Olivia's case:
"Now and then we see articles in various journals reporting that some part of some gene has been found, which may have something to do with autism....... We are assured that scientists are working on it and that the genetic cause of these conditions will be found! Not that it will help the patients or their families, but it will put our minds at rest in that our children were meant to be disabled and there was nothing we could do about it!
In our modern world, genetics is a popular concept. Almost every health problem is commonly blamed on genetics. We pollute the water we drink, the food we eat, the air we breathe with industrial and nuclear wastes and when we get ill we blame it all on genetics. We deplete our soils of minerals and other nutrients and replace them with pesticides, organophosphates, weedkillers and lots of other chemicals, we grow our crops on these soils, we eat these crops, we get ill and blame it all on genetics. We damage our children's immune systems with vaccinations and antibiotics and blame it all on genetics. We regularly consume processed foods with virtually no nourishment for the body that are full of chemicals and detrimental to health, and when we get ill we blame it all on genetics. We regularly intoxicate ourselves with alcohol, tobacco and drugs and when we get ill we blame it all on genetics.
We have epidemics of cancer, heart disease, learning disabilities, psychiatric maladies, autoimmune disorders etc etc etc. These are all conditions which doctors very rarely encountered 100 years ago. Have our genetics changed so quickly to cause these epidemics? For the last few decades genetic research or molecular biology has received the most research money in the Western world. A lot of laboratories which used to do basic science have been converted into genetic research. Billions have been poured into this area in every Western country. So, if every other scientist works in genetics then that is what they know and that is what they are going to think about when it comes to identifying the course of any disease. Obesity? Don't worry about your eating habits. Just wait, we will find a gene to blame for it!.
As with other modern epidemics, there is a conclusion that there may be a genetic predisposition to the GAPS disorder rather than a genetic cause. This predisposition can be made of tens or even hundreds of various genes, nobody knows yet how many and in what combinations. But what we do know is that before any predisposition materializes into a disease it has to have certain environmental conditions. Diet is a major part of this environmental conditioning.
There is a large body of research showing that maternal diet during pregnancy and the diet of a baby have a major impact on the genetics of that baby. Apparently, there are many genes in a child which never become active. For a gene to become operational it has to have certain conditions to express itself. Environment: our diet, lifestyle, pollution, stress, infections, etc. has a profound effect on what happens to the child's health. By changing the environment (diet etc.) we can make sure that whatever genetic predisposition the child may have, it will not develop into a disease.
In conclusion: it is possible that there are some non-specific genetic predispositions to autism, and other GAPS conditions, which quite likely overlap with a predisposition for autoimmune and digestive disorders and some weakness in the blood-brain barrier. It is very likely that this predisposition is very widespread and that modern environmental factors make it materialize into disease much more often than 100 years ago, when the environment was different. A century ago people may have had this predisposition just as much, but it did not show itself because the environment for it was not right - the diet was more natural, there was less pollution, less stress, no vaccinations, no antibiotics etc etc. One hundred years ago the majority of doctors did not see autism in their practice at all. Today we have a growing epidemic. Genetics just don't work this way. This epidemic can only be due to environmental factors: modern diet, lifestyles, vaccinations, drugs and pollution. Rather than dwelling on genetics, which we can do nothing about, I see this conclusion as positive, because there is a lot we can do to change the environment to help our children. And those who have done so know that it works!"
I love how Dr. McBride dives further into causes of this disorder, separate from genetics. Family history and learned behavior are things that are passed down from generation to generation. Abnormal gut flora, which is the cornerstone of this treatment, is passed from mother to child. She explains it with this scenario:
Another familial factor is learned behavior. What children learn from their parents - what to eat, how to cook, what foods to choose from, personal values & priorities. As Dr. McBride explains:
"Learned behaviours can vary quite dramatically from family to family. This is something being passed through generations without any genetic involvement. But it is as important as genetics if not more so, because it will alter the gut flora, the pH, the metabolism and the biochemistry of the body. And if the grandmother, daughter and granddaughter follow the same family behaviour then they will predispose themselves to similar health problems. For example, imagine a family where rich sugary deserts were always a tradition together with a lot of bread, pies, biscuits and cakes. This diet will alter the gut flora and promote an overgrowth of pathogenic microbes in the gut, which always has an unbalancing effect on the immune system. At the same time this a very house-proud family, so there is a lot of cleaning and polishing with domestic chemicals, air fresheners, deodorants, personal care products and perfumes - all highly allergenic and toxic substances and another onslaught on already compromised immune systems. We did not even come close to genetics here, but already you an see how the family can make us immune-compromised simply through learned behaviours."
How does this not make sense? I feel as though my generation was the beginning of using processed food. Casseroles made with pasta and cream of mushroom soup gained popularity for ease and economic reasons. Thankfully, my mom did not like things from a can (and did not like pasta) so I escaped that sort of "processed food addiction". Lunch and dinners at our house consisted of the same menu's over and over - meat, vegetable, vegetable, and my mom only had goodies like cakes and brownies for special occasions, never every night. Boring yes, and at the time I grew tired of the same old thing. But as I am learning, those meals preserved my immune system quite nicely. It also confirms to me why Olivia was completely normal at birth until the little shakes started at 16 months. Monthly doses of antibiotics, in addition to other factors took out her gut flora and set the stage for a very compromised immune system. I remember filling an antibiotic prescription once and the pharmacist said, "This is a pretty hefty dose for that little babe's body, I will call to check the accuracy." This memory makes me shudder. These words should have caused me to question, but I didn't - I trusted. Why did the doctor prescribing all these antibiotics think they were benign to the rest of her little body?
So, this is my answer to the people who have wondered about the genetic component of this tragedy. I'll never forget the comment an acquaintance said while I was pregnant with Lauren. She said, "Aren't you worried that your baby will turn out like Olivia?" The old me would have been extremely irritated by such an insensitive comment, but I was at peace. In no way was I worried, because deep down I knew the truth and I knew that we would make different choices with our unborn daughter - choices I wished I would have made for Olivia. Those choices, which included no vaccinations, have indeed produced a healthy child with a robust immune system. Her diet has always consisted of low amounts of sugar and processed foods, and lots of fresh organic meat and vegetables and freshly pressed juice. She may be one of the few six year olds that enjoys salmon, kale chips and kombucha tea!
To those reading this post whose future includes getting pregnant - get healthy yourself first! There is an entire chapter in the GAPS book on this very subject. You (and your future bundle of joy) will be thankful!